Context: my wife, Phyl Gerber, was diagnosed with Lou Gehrig’s Disease on March 15, 2017. I am her primary caregiver. The ALS community has shorthand for a person who is a caregiver for someone living with ALS. We are called CALS (caregiver for ALS) and the person with the disease is a PALS (person with ALS).
I was moved by an essay written by someone who served as a CALS for more than 10 years until her PALS passed. She wrote on our Facebook Group… “I found myself over the years of caring for my PALS thinking of the phrase, ‘the two shall become one’ and sadly smiling.” Her essay inspired me to share my own experience as a CALS for Phyl over the past 3-4 years on the same Facebook group which is exclusively for caregivers for people with ALS. It was written without naming Phyl because the group members don’t know her… so she is referred to as “my PALS”.
John M. Gerber
When first diagnosed, my PALS suffered anxiety, fear, a sense of loss, a feeling of being cheated out of a “normal” aging process, and deep, deep sadness. As a CALS, my job was to be supportive, to listen, to love, and care for her to the best of my ability… and not to try to “fix her” – which of course was my first instinct. Early symptoms were merely annoying; dropped silverware, an occasional trip on a crack in the sidewalk, an inability to open a jar because of weakened hands. Our long hikes in the mountains (we climbed two 13,000 ft. peaks in Colorado) become shorter and on flatter terrain. Bike rides were no longer 30 miles in the hills but 8 miles on the bike path for a fruit smoothie.
Adjustments and adaptation became part of our daily routine, and as long as we didn’t project too far into the future, it was relatively easy to manage. We tried to live “one day at a time” and deal with whatever came up that day. And while I read as much as I could about the disease…. I had no idea of the trials we were going to experience (and still are) but I began to understand what it is like to know that I don’t know what will come next.
As my PALS began to show more pronounced symptoms, I gradually assumed primary responsibility for the laundry, dishes, house cleaning, gardening, shopping, cooking, making beds, paying bills, and all the routine things that were once shared by two. Over time and gradually (through trial and error …. lots of errors) I began to assist with more personal things like dressing and undressing, showering, stretching out muscles that were no longer being used, and transfers from a power wheelchair to bed or toilet.
Then there were the disease specific tasks of managing medications, feeding tube, setting up the respirator at night, doctors’ visits and home visits from various professionals, and the most frustrating of all…. dealing with insurance companies. Fortunately, the changes were slow enough not to throw us into a permanent state of crisis. Each of these tasks was acquired (more or less) gracefully over time and generally with good cheer by both of us. Prayers and an “attitude of gratitude” helped reduce the momentary resentments and frustrations. Sadness was balanced with joy, and fear was pushed aside by faith in a power greater than myself. Gratitude for the things that we have today (family mostly) and have had since I met this 15-year old girl in the cafeteria of our high school more than 50 years ago continued to grow as the disease continued to progress.
My PALS presents a positive attitude to the world. She is told how good she looks and how remarkable it is that she continues to be active. She is told “she is an inspiration”… and she is. And then from time to time, in the privacy of our home, she falls apart and can’t stop crying. It happens rarely and is more likely to be triggered by “a broken shoe lace” (something minor) rather than something big that needs our attention (like a pill she can’t swallow or a throat spasm that makes it hard to breath). As I hold her while she sobs, my (unspoken) advice to her that she should “accept the things she cannot change” then turns back on me and I need to take my own advice. I can’t “fix her” and I need to practice the acceptance that I preach. So I just hold her and don’t say anything. Acceptance is not so easy when its my turn.
Nevertheless, I’ve learned that acceptance of things we cannot change is critical to daily living. Acceptance is not resignation (giving up) nor is it approval (its NOT okay – it is a lousy deal she has been dealt). Acceptance is a prayer and a practice that allows me to get through the day and often experience a sense of peace and serenity even when things get tough. And then it all falls apart again….
As the disease progressed, the simple daily tasks included repeating what she just told the guy at the supermarket fish counter who couldn’t hear her yell at the top of her voice “one pound of salmon please”, or setting up her amplifier so she could talk to a friend on her cellphone, wiping tears or nose or butt, and setting up a book tape or a TV show to try to ease the boredom. One of the “dangers” of being a full time CALS seems to be that I tend to think of little other than ALS and “what does my PALS need now.” I find myself sitting among friends while they discuss their latest trip, meal, purchase, or work challenge thinking “why are we not talking about my wife and ALS, or at least something important like living and dying?” I don’t say anything.
The person who inspired me to write this post wrote in our Facebook Caregivers Group that we become “one with them.” Sometimes I feel this way, yet I know this isn’t entirely true. I can’t suffer the disease directly, although I (think I) would gladly do so if it gave my PALS relief. She has her own journey and while I can walk alongside, I can’t do it for her. I am “one with her”… and not.
But something else surely is true. In very surprising ways, a feeling of oneness has made my love for her deeper in ways I cannot describe. While I would not wish this experience on anybody, one of the unintended outcomes of the disease has been that we have become deeply connected to each other in ways that people living “normal” lives may not know (maybe they do, but it is not apparent). I keep “falling in love” with this girl I met in the high school cafeteria… over and over. And strangely enough, I have learned much about myself. I know who I am, and I know what I am capable of doing because I have been “stretched” beyond anything I ever thought possible.
I surely don’t like that the love of my life needs a caregiver…. but I’ve found this to be the most rewarding job I’ve ever had. And my constant prayer is to be allowed to continue to be a caregiver for her… for a long, long time…
For more on my experience as a caregiver, see: